ALS Ice Bucket Challenge: Where is the Money Going?

The ALS Association has received $106 million in Ice Bucket Challenge donations, but what exactly will the money be used for?

The ALS Association has enjoyed astronomical levels of success with their viral Ice Bucket Challenge campaign to raise awareness and funds for ALS. From the 29th of July to the 2nd of September, the not-for-profit charity has raised over $106 million in donations, much more than the $2.7 million they received during the same time period last year. There is no doubt that the campaign has raised vast amounts of money and awareness for the rare motor neurone disorder, but where exactly will this money go?

ALS Association Expenses (2013 fiscal year)

The above chart gives a breakdown of the ALS Associations financial activities in 2013. Overall, the association has raised a lot more money this year. Although, rightly, administration costs have remained reasonably low at just 7% of the total expenses, it is worth noting that only 28% of the associations expenses have gone directly towards research. Naturally, there will be yearly variations in how many clinical studies and trials are taking place, but this figure was similar to the previous years too, when only 27% of the associations expenses went towards research in 2012. These expenses are currently funding 100 research projects. Recent findings of some of these research projects have included:

The identification of the principle ALS gene – C9orf72

Approaches that target gene mutations as the focus of recent clinical trials

The use of pluripotent stem cells developed from individuals skin cells in drug development and investigation

The ALS Association claims to fund all phases of ALS research and aims to ‘Involve a world-renowned panel of scientific advisors.’ It also claims to channel its funding into identifying ALS genes, understanding the disease, using stem cells to develop therapies, identifying biomarkers and improving clinical trials.

In 2013, 32% of the associations expenses went towards ‘public and professional education.’ These are otherwise known as lobbying expenses, which the association has used to advocate for increased financial and public policy support from government, as well as financial support from the private sector. These efforts have led to some notable achievements, including the creation of a national ALS registry and an ALS military veterans benefits programme. However, despite these achievements, one can’t help but wonder what would have been achieved if a greater proportion of lobbying expenses were allocated to research.

Nineteen percent of the association’s budget is spent on patient and community services. Care is offered through the associations different chapters located across the United States, and comes in the form of support groups, care management and education.

There is no doubt that the ALS Association has a positive impact on the lives of ALS patients, and with the boom of donations as a result of the ice bucket challenge, it will be interesting to see how the association spends this money.

With regards to how the Ice Bucket Challenge donations will be spent, the association has said that they “cannot provide a breakdown at this time” and “in the coming weeks, we will be able able to enhance our strategic plan, reformulating and recasting strategies with input from stakeholders…”

One can’t help but wonder what the donation money be spent towards. Will it be spent like last year? Will it go towards lobbying or patient care? Or will it be poured into research which is, arguably, the most impactful way to spend the money.

Finally, has this campaign raised awareness for rare diseases as a whole, and will the public begin to educate themselves and donate to rare disease causes?

Only time will be able to answer these questions, but one thing is certain: the ALS Ice Bucket Challenge has been a good start.